Many important decisions need to be made when a person is diagnosed with a terminal illness. Decisions include:
Right to refuse treatment. The patient and family have the right to refuse treatment, and in most cases, health care providers will agree and follow their wishes. Occasionally, especially when the family makes decisions without a health care proxy or advanced directive, or when there are disagreements among family members, the health care team may ask for more discussion. Involving experts in medical ethics and senior doctors usually achieves a consensus that will be in line with the patient's wishes.
Decision to die in the home versus hospital setting. Many families want their loved ones to die at home in their natural and most comfortable setting. Others do not feel they can emotionally handle the death in their home. Include all family members in this important decision. Not all decisions have to be made at once, and they can be reversed. In some cases, families think they want to be at home and then find the hospital to be more comfortable, whereas some families choose to be in the hospital and then find that they and the patient are more comfortable at home. Time and circumstances can help to make these decisions. Ask as many questions as possible to get the information needed to make the best decision for your family.
Advance directives, if age 18 or older. Adults can prepare an advance directive. Advance directives are documents that are used only if a person loses capacity to make decisions, or suffers an injury or disease that renders him or her unable to communicate his or her wishes. People younger than 18 may prepare an advance directive. In most cases, however, parents or health care providers are not required by law to honor it.
Living will. A living will covers health care decisions when you are terminally ill or permanently unconscious.
Health care power of attorney or health care proxy. Durable power of attorney for health care allows a person to name an agent or proxy (substitute person) to make health care decisions if the time comes when the patient is unable to do so.
Do not resuscitate (DNR) order. A do not resuscitate order is a formal request by a person or a person's family to not take extreme measures to save his or her life. A DNR order is usually reserved for a person near death or with a terminal illness who, even if resuscitated, would not have a high quality of life or a long period before death would occur despite resuscitative efforts. DNR orders can specify how much intervention is desired before death (for example, no use of cardiac drugs, no oxygen, or no chest compressions). These need to be discussed and written by a doctor. A DNR is also needed for home.
Autopsy decisions. An autopsy is an examination of the organs and/or tissues of the body after death. An autopsy is often used to determine the cause of death, but it may also be done to research the fatal disease for future diagnosis, treatment, and prevention strategies, or to improve the quality of care in the hospital or for medical teaching. The decision to have an autopsy is a personal choice and should be decided when the family is ready. Often an autopsy may help the family with closure. In a patient with a rare disease or cancer, or with a condition that has a genetic cause, an autopsy can provide important information for other family members. If genetic testing has not already been done, or is not available at the time, DNA banking may provide an option of testing in the future.
Organ donation, if possible. Laws governing organ donation vary slightly from state to state. Your health care provider will be able to inform you of these options.
Palliative/hospice care. Palliative care is care aimed at comfort rather than cure and treatment. Hospice is a type of palliative care that provides services to improve the quality of life for the family and patient, stressing peace, comfort, and dignity.
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